A recent tweet brought the world up to date with what’s been going on in @suzysopenheart’s world. It is typically outward looking and, as the twitter handle suggests, open hearted, yet with hints of the gritty realities involved when caring for someone you love in these troubled coronavirus times.
At 8pm my new care shift helping Mum to bed will have just finished. I will definitely be joining in #clapforourcarers #clapforNHS but also thinking about family carers who are having to cope often alone & with no support, PPE or training. #WeAreInThisTogether” 👏 👏 👏
Suzy Webster (aka @suzyopenheart) cares for her 73-year-old mum who has dementia and recently took the decision to reduce her mum’s domiciliary carers, and thus her risk of contracting Covid-19, by taking on the evening shift herself.
Suzy, her husband Andrew and their two young daughters aged 11 and 14 also share their house with Suzy’s parents. For a glimpse into their world a year ago, take just a couple of minutes to watch this little film of Suzy and her mum. It’s guaranteed to lift your spirits.
It was first suggested in 2012 that Suzy’s parents should move from Somerset to come and live with them and their two daughters Elsie and Anna, then aged six and three, in Chepstow.
Suzy’s dad Gordon wasn’t sure. “You’ve got your own family Suzy,” he said. “You are my family,” his daughter replied. This straightforward approach, based on profound love, governs the 43-year-old’s actions. She and Andrew found a house divided in two so that her parents could live with them while remaining as independent as possible and they could all, in Suzy’s words, embark on the “dementia adventure” together.
Suzy’s best friend questioned her decision. “This is for the rest of their lives – are you sure, Suzy?” Having worked in the care sector since the age of 16, Suzy (who now has roles with Age Cymru and My Home Life, which promotes quality of life in care homes) was quite sure. An only child, she was well aware that no army of carers would come riding over the hill to help her elderly parents, and that her dad would be placed under such massive stress that they could easily lose him first.
“The only way that we could get through this was if we all moved in together,” she says. “Their move here was an attempt to save us all.”
In the early years of living together they made quite a team and there were, says Suzy, many positives. Her mum Barbara, who has two types of dementia – Alzheimer’s and a rarer form linked to her hydrocephalus (fluid on the brain) – was still walking and could play with the girls. Gordon was active, and the pair of them often babysat for Suzy and Andrew. The children got to know their grandparents very well and both girls are now, according to their mum, incredible carers.
But, inevitably, Barbara’s health deteriorated until she needed a wheelchair and hoist. No longer able to cope alone, several months ago Suzy hired carers from a local family-run agency.
Six carers attend in pairs three times a day to help Barbara get up in the morning; they pop in again at 4.30pm and assist her to bed at 7.30pm. Unfortunately, although the agency try their best, there is very little continuity of carers. In Suzy’s words, streams of strangers come in and out of the house every day – this can amount to as many as 20 different people a week and wasn’t something that Suzy had envisaged.
“It’s simply what we’re dealt,” she says with characteristic stoicism, adding that one benefit is that her dad loves company and chats to them all.
Then, a month or so ago, coronavirus struck the UK. The day centre to which Gordon took his wife every week, shut up shop. The Singing for Fun group Suzy set up was forced to close, her daughters could no longer attend school. With two people over 70 in the household, the family needed to self-isolate, but Barbara needed carers. What to do? It is a dilemma facing thousands of families.
Suzy’s immediate reaction was to take over all of her mum’s care herself. However Andrew, a hospice chaplain but most of all a caring husband, understood the emotional, mental and physical impact this would have on his wife. So instead he suggested initially dropping just one of the carers’ visits.
They now come twice daily, with Suzy and a carer carrying out the evening routine, which is the easiest because it involves only one movement from chair to bed. Suzy helps her mum wash and change into her nightdress, apply her Nivea face cream and brush her teeth, and then puts her to bed.
“It is a bit like I used to do with the children. I watch mum close her eyes and relax into the sleep that she needs”.
Suzy knows that her dad isn’t up to caring for her mum, either physically or emotionally. So, as she said in her upbeat tweet, she puts on her latex gloves, meets the carer at the door and “goes on shift.” Once again, behind the stoic face is the poignant role reversal that occurs when child becomes carer to parent.
It’s also worth noting that Monmouthshire county council noticed Suzy’s tweet and said that they would drop off personal protective equipment should Barbara show any symptoms of the coronavirus.
Suzy knows that her mum could die during the pandemic. There was no choice but to retain some carers which means, by definition, people (sometimes strangers) entering their home every day. All Suzy can do is to ensure, when they visit, that strict precautions are taken with masks, gloves and stringent hygiene checks.
“I can’t protect mum any more than that. Perhaps it is her time. Coronavirus has brought lots of things to the surface emotionally and physically. Day to day I haven’t got time to think, but I’m watching mum grow down just as you watch a child grow up.
“I sometimes look at mum and think, we’ve lost you a little bit more today”.
You may have done Suzy. In fact, this being dementia, you almost certainly have. But you, just like all the other family carers out there, are providing the most important things in life: you’re giving your mum a family, a home and selfless, unconditional love.